SVR ONE YEAR- Please sign in

[willy]

Nice to see you here Pixie.  It won't be long before you are heretoo, Lefty.

I can remember in 2004 we had a large fight on the board.  (lol; imagine that  )  There was a member who asserted that interferon and riba (today's SOC) could not be used to successfully treat genotype 1's.  Of course there were many unhappy people who were treating who felt it was untrue, or a blatent lie...... but we had no one here who who could come forth and say that they were a geno 1 and SVR.  It took some time before some at the board were able to provide that truth and proof.  It was at that time I suggested that a thread be started.  Nobody jumped on the idea and in a way..... it may have been more comfortable not having the thread than to have one with no success stories.  Since then many things have changed and we all know many people who have SVR'ed.  I still think that people who treat need assurance from "real people" whom they know.

One of my favorite stories this year is from a guy who treated 7 times in the past and who failed 7 times.  He got on the Vertex trial and cleared by week 2 and maintained and is way past his SVR date now, approaching his 6 month post SVR date.  Also of interest since his staging was so advanced that he theorized that IF he hadn't have treated so many times he would have advanced into ESLF and died had he not continuously tried and tried TX.  His "failures" kept him alove long enough till a treatment could finally cure him.

Anyway........ just a few thoughts I'd throw into the mix today.....nearly 2009 now.

best,
Willy

[OZ]

I was reading all of the old posts on this thread, including mine.
It has now been over 4 years clear.   
Amazing since when I started, no one had any information on Genotype 4's
We now know we have a slightly better response rate than genotype 1 but still require a year of treatment.
The best part of remaining clear, is knowing that I won't have to go through the hell of treatment again.
And that my liver stays well. 
OZ

[pixie]

I was told on another forum as I got no sides from treatment the Meds wasn`t working and I would not get SVR.....

When I found out I was a Geno 1b I was very upset as again I heard not many cleared this strain of virus, since then I hear of lots that do.....

I was going to suggest we start a thread on the myths of HepC but perhaps its wiser not to..LOL

Now I am going to look for the raging thread ..Px

[pixie]

Ah found the original questions so will fill it in

genotype 1b
starting viral load or other LFT's, 1.5 Million
stage of liver damage preceding treatment,stage 3
# months of treatment,48 weeks
at what week you hit zero viral load,12 weeks when I did Tx 4 week PCRs wasn`t done
various sidebars on treatment (needed procrit, transusions, antidepressants, or other related extr-hepatic problems)No extra meds tho my blood went very low, hb 8, Neuts 0.2, no dose reduction
Various side effects and solutions to them.No sides
.....possibly thing(s) that helped them the most with TX, definitely diet, drinking plenty of water, taking control of your treatment getting copies of results and understanding them
# of days since treament that you have been clear 2 years clear of the virus

[willy]

Now I am going to look for the raging thread ..Px

How many would you like?  

I'll see if I could add the one here...... (my Christmas gift to you and this thread....)

Willy

here ya go.....
http://www.hcvanonymous.com/SMF/index.php?topic=925.msg7528#msg7528

Keep in mind that it was 4 years ago and there was a lot of stuff being thrown out that was less known then than we now know.  I was only about 5 months post DX; there was a lot that I didn't know.  (lol; and a lot I still don't know)   

[MissyMouse]

Willy,

I can so relate to the statment your friend made that he truly believed that had he not kept treating he would have advanced to ESLF ... as you know, that is why I fought so hard to be able to treat again.   Even if I only have a slim chance of getting SVR this time I know that I gave my liver a rest for 18 more months.

Mouse

[Pancho and Lefty]

I just made a count of SVR's by genotype:

geno 1.........14

geno 2..........6

geno 3..........3


geno 4.........1

A couple people didn't list geno so they are not included. Usual disclaimer about mathmatical errors. 

May the list get ever longer.

Max

I updated the geno 1 SVR's to include Pixie.   I love this thread.

PS On one forum  it's commonly written that people with ALT as high as mine do not gain SVR.  I quit going there.

[Mongo]

Pancho & Lefty,

We cheered you when you got your "Negitive" on, and we cheer you now that you are a "Quitter"  !  !  !

Thanks Amigo.


Kerry

[dyanpaintedlady]

HI this is dyanpaintedlady, I am so glad to hear all the successs stories I could cry from happiness. I have only heard 2 other success stories. I can see that the road traveled was not always easy & with out struggle but you hung in there that gives me strenth, hope and encouragement. Congratulations again and thanks for sharing the real deal. dyan

[Hank's mom]

Sheesh Willy - What a happy land of heppers back in the day - though I am sure the Jackie wars ended long ago. I see what you meant about unbridled rage. I'm sure it made sense to both parties at the time and wonder what their stance is now.

Max - It's an interesting list and uplifting as well.

I am glad you are able to add your piece to the statistics in the SVR column.

Susie

[willy]

It is a good thread for a number of reasons.  It's one of my favorites, worts and all.   

First...... this was quite a while ago right at about 5 years.  I had been here about 4-5 months I'd guess, and although all of my threads now look as if I may have been a moderator when writing it was far from the case.

Oddly though...... Laura, too tall.... dropped in and tried to square things away.  Laura's manner was very light handed.  She was a strong believer in allowing people to speak their peace.

"no cure" just showed up as a guest but it was Dan, the "evil moderator" who helped set this forum up.  For a period of time there was not much moderation.  Dan would pop in from time to time and help steer things as he did in this thread.  Dan soon continued on as a mod/admin and spent a lot of time and effort on the forum.  He was responsible for the switching from the yabb bulletin board to the current SMF format.  He is a great guy and has done so much for this board over a very long period of time.

"vicki smith" I am sorry to say is dead......or so it is said.  Joris kept in touch with her as a friend.  One day he got a notification from her husband.  It turned out that he was the one who had HCV and Vicki was just a concerned person essentially speaking as though it was her that was infected.  This was not the last thread in which a large fight ensued.  She was in a few more during some troubled times here.  You can find a thread about her in memorials, posted by Joris.

As I said...... Laura had a light hand in her duties as a moderator.  I never know exactly where one draws the line in conflicts but imagine if you will this thread if she had been banned and her post deleted.  In time one draws a sort of conclusion that within some limits some of the most entertaining, educational and well rounded conversations often revolve around a sort of conflict or disagreement.  When these happen people are often at their most engaged and often most willing to passionately speak their truth.....as they know it

I think that the goal of moderators then is to allow these conversations to occur.....to not reign things in so tight as to constrict communication.  As I have said....some of the better things that I have read were often in some of the free for alls that can occasionally occur in forums.  LOL; the reverse is not true however; all rude fights are excellent prose. 

I posted this thread for another reason; to remember a few people.

Sands 3 finished treating and I have lost track of him.  I am unaware of his status.
todd relapsed and started in with infergen....and for a period of time double dosed; condition unknown.
Jackie finished treatment.....moderated here for several years.  Geno 1 and SVR for probably 4 years.
Patti finished treatment and SVR'ed.  Genotype 1 SVR 4 years
jjn finished TX.  Genotype 1 SVR 4 years
Mike Boston; Genotype 1 SVR 4 years
Marina; genotype 1 SVR 4 years
Joris; genotype 1 SVR 4 years
Lazarus was a genotype 1 and we never heard if he cleared or not.

Yes..... the protease inhibitor (biln 221?) we were discussing had just made trials...phase 1 and had spectacular results.....and then was pulled for safety concerns.  5 years later we still do not have an approved drug but several seem to be on the horizon, but still 2 years from approval.

I am glad that you enjoyed the thread.

best,
Willy

[Lightkeeper3]

Hello everyone,
                 
It's been awhile. I was talking to Kat, so here I am! I'm almost two years clear (SVR). I was a 1a @ over 8 million VL when I started my journey as well as a long-time drinker. Boy, has my life changed since then! I quit drinking, went through a divorce after 14 years married and started tx. I did 42 weeks of peg/riba & had to stop due to developing diabetes, type 2. I'm now type 1...been having trouble all year (five shots a day!) & will get an insulin pump in a couple of weeks. It's sensational to read all the posts of those who have kicked the dragons azz & those who are fighting & staying strong. I feel like crying right now but I'm too strong for that now! Ha, ha! How could one go through all this and not come out the other side stronger? What doesn't kill us makes us stronger!

Truly, my tx is kind of a blur...I was in misery and sick as hell but I MADE IT. Lost a lot of my hair, 85 lbs., itched all over, mouth sores, vomit--you name it-I endured it! I had the BEST gastro dr on the planet & she made me as comfotable as she possibly could. And hey, I'm better off without HIM! When the going gets rough is when you find out who your real friends are. 

I'll leave the light on for ya!
Stay Strong!
Cheryl

[mindy]

Willy, that is a great idea.  I have geno IA and have been off tx for one and a half years.  I go get my viral load count in August.  I had to do Procrit for red cells, neprogen for white cells, besides the ribovirin and interferon.  All hard stuff.

[Hank's mom]

Mindy - Thank you for bumping this up again.  Sometimes there is so much to read that worthy older threads, like worthy old Moms get swept into the corners.

Good history lesson Willy, I'd forgotten about it, but know it is true in our community and for those I know locally.  Four years ago I had just found out about my hepperhood, though I had been begging for years for an answer to my fatigue and holding on to a cold like it was a piece of gold - gold cold, hmmmm...

Anyway, I just heard yet another story of someone who tried and did not respond to the 3 sots per week and riba.  She had to be transfused every week, and came out basically where she started.  Her husband had to quit his job to help her and truck her around, but is happy in his new job and she is back to working - part time from home and is monitored in case things start to go south again.  Shame is, neither he nor she told anyone during the time, but since I am such a blabbermouth, he did tell me.  My son is his son's best friend and he had no idea either.  (I taught my kids not to ever be ashamed to tell anyone, and that it might just explain away all kinds of false rumors about me and therefore the kids.)  It could have made it so much easier for her and her family if they had shared the fact of her struggle. 

I often wonder where I'd be if I never found out since no other doc except the new one I had transferred to hadn't found HCV.  It doesn't do much good to ponder, but does prove to be an idea starter for some pretty good writing and art for me.  Yet, I still have no regrets for trying the one shot per week Peg and riba, the daily scourge, infergen and riba, the month of maintenance which only succeeded in making me suicidal, because I know I tried and now someone else may be saved by my little statistic on a page or puter.

Sorry, I can't honestly say I know where I am going with this, but then again, history is how we learn, improve, and by the grace of angels finally get things right.  Again, thanks Mindy for bumping this up, and thanks Willy for the value of a little history now and then.

Susie

[Pancho and Lefty]

Hi people,

I've been waiting for this day for what seems like a very long time. I just talked to the lab tech and she read the results to me. At 47+ weeks post tx the virus is UND to >5 iu/ml. The qualifies as SVR in my book.

Right now it's a leap to realize the whole ordeal is actually over.

genotype. . . 3A

starting viral load or other LFT's. . . .VL 330,000

stage of liver damage preceding treatment. . . first pathologist said stage 3, review downgraded to stage 2

# months of treatment. . . 24 wks
at what week you hit zero viral load. . . VL at week 4. . . 18 iu/ml. . . undie at next PCR

various sidebars on treatment (needed procrit, transusions, antidepressants, or other related extr-hepatic problems). . . no rescue drugs. I tried (and wished to take) antidepressant (Lexapro). . .it gave me headaches and insomnia so I stopped. No real skin rash or other problems.

Various side effects and solutions to them. . . . I used a heating pad for muscle aches. . . ambien CR for sleep. . . the combination produced three blisters on my back side before I realized what was happening. 
Missy advised I try Tramadol for pain and general mood. . . it was very effective on both accounts.

possibly thing(s) that helped them the most with TX. . . I think we all try to get a laugh anytime/anywhere we can during tx. I'm one person who used (hopefully not abused  ) this forum during tx. Being able to relate to people who were dealing with the same disease and treatment was helpful beyond words.

# of days since treament that you have been clear. . . last day of tx August 23, 2008. . . today is July 29, 2009.

It's been a long time coming. . . . hopefully it will be a long time gone.

Thanks everyone.

Max